May 5, 1993 EXTENSIONS OF REMARKS 9335 EXTENSIONS OF REMARKS FAMILY CAREGIVER SUPPORT ACT through hallucinations brought on by Alz­ (1) An individual age 18 or over who, with­ OF 1993 heimer's-an emotional nightmare that adds to out subf::tantial human assistance or super­ the unrelenting physical demands of his care. vision, cannot perform at least 3 out of 5 Ac­ The respite program gives this woman a tivities of Daily Living (ADL); or HON. SANDER M. LEVIN (2) An individual age 18 or over who needs OF MICHIGAN chance to get away, to regroup, for 4 hours substantial human assistance or supervision once a week, when a trained companion IN THE HOUSE OF REPRESENTATIVES because of cognitive or other mental impair­ comes to her house to take over for her. ment which impedes ability to function or Wednesday, May 5, 1993 Two young men are caring for their mother causes behaviors that pose a serious health Mr. LEVIN. Mr. Speaker, today I am reintro­ who has Alzheimer's disease. They both work or safety hazard to the individual or others; ducing the Family Caregiver Support Act, leg­ full time. Through the respite program, their or islation to support the caregiving efforts of the mother goes to a day care program 1 day a (3) A child who is receiving SSI disability family members of the estimated 2.4 million in­ week, and has a companion at home for 4 payments or would be eligible for such pay­ hours once a week. With this minimal help, ments but for SSI income or resource limita­ dividuals with functional limitations who could tions. not otherwise remain at home. Joining me in and by working alternate shifts, they are able A caregiver is a spouse, parent, child, rel­ introducing this bill are Mr. MARKEY and Mr. to keep their mother at home. ative or other person who has primary re­ LEWIS of Georgia. Mr. BRADLEY is introducing A young mother of elementary school age sponsibility for providing care for an individ­ similar legislation in the Senate. children has been caring for her mother, who ual with functional limitations, does not re­ Family caregivers provide the majority of is in her fifties and has Alzheimer's disease, ceive financial renumeration for the care community based long-term care for their along with her frail grandmother. The respite provided, and has provided care for a period loved ones. They do so willingly and without program has provided her enough day care of at least three months. and in-home help to keep her mother at home Services are available without cost for a pay, but at tremendous physical and emotional functionally impaired person with income costs. for over 3 years. This modest program is a lifeline for the below 200% of poverty, and on a sliding scale Study after study has documented the toll families it serves. Unfortunately, it only for persons with incomes above 200% of pov­ that caregiving takes on family members­ erty and less than $75 ,000. scratches the surface. There are over twice as mostly mid-life and older women, who take on many families on the waiting list than are cur­ SERVICES this job. More than one-third of caregivers are rently being served. An eligible person is entitled to a maxi­ over age 65 and 10 percent are over age 75. The needs are great and the available re­ mum of $2,400 of services per year. They perform an intimate and unrelenting task sources small. I have personally met with fam­ Services may be provided on an hourly, daily, or overnight basis, according to an in­ which can continue for years, and which ily members who are in severe need of help wears the caregivers down both in obvious dividual service plan based on an assessment to care for their loved ones disabled by many of the caregiver and care recipient's particu­ and hidden ways. Caregivers suffer dispropor­ different conditions, and these families cannot lar needs. tionately from lowered immune function, de­ find the help they need. In many parts of Services include: companion services, pression, exhaustion, and stress-related illness Michigan, and across the country, there are no homemaker services, personal assistance, and injury. programs at all-not even a waiting list to community day se~·vices, temporary care in a According to the Alzheimer's Association, it sign. The Family Caregiver Support Act is de­ licensed or accredited facility, and other would cost an estimated $54 billion to replace signed to fill that void. services specified by the state. Services may these family caregivers with formal paid care. The Family Caregiver Support Act is not the not duplicate or supplant those available The cost in human terms is immeasurable. If complete answer to long-term care. Many under Medicare, Medicaid, or private insur­ ance. we do not help families to continue the job Americans do not even have family they are doing, and want to do, the current caregivers-others could live independently H.R.- voluntary patchwork system will disintegrate. with some support, or need more care than Be it enacted by the Senate and House of Rep­ Caregivers overwhelmingly report that what their families can provide even with Hmited resentatives of the United States of America in they need most is respit~a little time off from outside assistance. This legislation starts with Congress assembled, the constant demands of care. the most economical, the most caring, and the SECTION 1. SHORT TITLE. The Family Caregivers Support Act is sup­ most practical approach, and for millions of This Act may be cited as the "Family ported by the Alzheimer's Association, the American families, it is what they need to keep Caregiver Support Act of 1993". Older Women's League, and organizations going. SEC. 2. FAMILY CAREGIVER SUPPORT PROGRAM representing persons with physical and mental Mr. Speaker, I request that a summary and ESTABLISHED. limitations. The legislation is based upon suc­ text of the bill be included in the RECORD fol­ (a) IN GENERAL.-The Social Security Act lowing my remarks. (42 U.S.C. 301 et seq.) is amended by adding cessful community based programs which at the end thereof the following new title: have been able to piece together voluntary, SUMMARY: THE FAMILY CAREGIVER SUPPORT "TITLE XXI-GRANTS TO STATES FOR private, and scarce public resources to offer ACT OF 1993 The Family Caregiver Support Act of 1993 FAMILY CAREGIVER SUPPORT PRO­ limited help to families in need. GRAMS In Michigan for example, the Detroit Area addresses the long-term care needs of indi­ viduals with functional limitations through "PURPOSE OF TITLE; AUTHORIZATION OF Chapter of the Alzheimer's Association oper­ state administered respite care programs APPROPRIATIONS ates a respite care program which serves supporting a flexible variety of respite serv­ "SEC. 2101. For the purpose of enabling $200 families in the greater Detroit area. By ices. For the elderly spouse of someone with each State to furnish services to support in­ joining foundation grants, State funds, volun­ Alzheimer's disease, this might mean an formal caregivers of individuals with fui:c­ teer services, and fees paid by families on a hour or two a week to attend to personal tional limitations by providing services de­ sliding scale, the association is able to provide needs; for the mother of a severely disabled signed to facilitate and strengthen informal child this might include a couple of hours of enough assistance to keep families going. support systems to help maintain individuals day care to allow time and attention to with functional limitations within the com­ Examples of how this program is helping other children in the family. Other service families includes: munity, there are authorized to be appro­ options include companion services, tem­ priated for each fiscal year such sums as An 80-year old woman cares for her hus­ porary care in a hospital, nursing home or may be necessary to carry out the purposes band who has Alzheimer's disease. Both the community center. of this title. The sums made available under woman and her husband are Holocaust survi­ ELIGIBILITY this section shall be used for making pay­ vors. Her husband is reliving his experiences A person with functional limitations is: ments to States which have submitted, and e This "bullet" symbol identifies statements or insertions which are not spoken by a Member of the Senate on the floor. Matter set in this typeface indicates words inserted or appended, rather than spoken, by a Member of the House on the floor. 9336 EXTENSIONS OF REMARKS May 5, 1993 had approved by the Secretary, State plans the Office of Management and Budget and re­ " (I) impedes ability to function; or for family caregiver support services. vised annually in accordance with section " (II) causes behavior that poses a serious " STATE PLANS FOR FAMILY CAREGIVER 673(2) of the Omnibus Budget Reconciliation health or safety hazard to such individual or SUPPORT SERVICES Act of 1981); and others; or " SEC. 2102. A State plan for family " (B) that a copayment shall be required on " (B) is a child who is receiving disability caregiver support services must- a sliding scale basis (as determined by the payments, or would be eligible for such pay­ " (l) provide that it shall be in effect in all State) for individuals with functional limita­ ments, but for the income or resource limita­ political subdivisions of the State, and if ad­ tions with incomes in excess of 200 percent of tions considered for determining eligibility ministered by them, be mandatory upon such income line; and under title XVI of this Act.